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AHCF Future Direction Jeff Wuchich, AHCF President 2012 Family Meeting 7/1/12

AHCF Future Direction Jeff Wuchich, AHCF President 2012 Family Meeting 7/1/12 . A Dream…. One Dream We All Can Share. WE WILL CURE AHC BY 2025!. How Do We Get There? . Some factors beyond our control Research outcomes & potential complications Hitting a drug compound “home run”

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AHCF Future Direction Jeff Wuchich, AHCF President 2012 Family Meeting 7/1/12

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  1. AHCF Future DirectionJeff Wuchich, AHCF President2012 Family Meeting 7/1/12

  2. A Dream…

  3. One Dream We All Can Share • WE WILL CUREAHC BY 2025!

  4. How Do We Get There? • Some factors beyond our control • Research outcomes & potential complications • Hitting a drug compound “home run” • Governmental approval process for therapies/cure • Let’s focus on what we CANcontrol to help NOW & in the future • Collaboration • Care & Connections • Conversations • Capital

  5. Collaboration • International Associations • Share Info on projects/proposals • Share best practices –standardize data collection • United front to drive research & reach unserved countries • Other Disease Foundations • Officially members of NORD as of June, 2012 • Epilepsy, Dystonia foundations possible co-funding depending on scope • Researchers • Work with Medical Advisory Board (MAB) to create RFP for research direction • Facilitate discussions with research groups (i.e. Utah/Duke, Utah/Vanderbilt) • Families & Supporters • Foundation exists to help ALL AHC sufferers- it’s YOUR Foundation • Monthly Virtual “Town Hall” Meetings via GoToMeeting • Call or Email me any time with comments or suggestions • Communicate volunteer opportunities

  6. Care & Connections • Family Mentors • Families of older children willing to help guide newly diagnosed families • Willing to participate in Virtual “Town Hall” to provide experience • Guest blogging on Website to provide helpful hints • Resources for Adult AHC Sufferers • Forum similar to Yahoo! that parents use so AHC adults can share experiences • Equip AHC adults to be as independent as possible • Financial Resources • Like Italian Assoc.- help families afford therapy items (either directly or through resource list) • List of agencies (like Medical Home) that can help obtain assistance • Physician/Care Professional Database • List of physicians who are familiar with AHC (treating a sufferer) • List of other professionals (Therapists, Caregivers)

  7. Conversations • Research Results Announcement • When time comes leverage PR Plan • Work with Pepsi & Major Media to showcase “little Engine that Could” Story of Transformation • Conferences • Through NORD potential scholarship to 2nd Annual Rare Disease Conference • Also potential for literature share at NORD events (minimal cost – materials/postage) • Local Outreach • Talking points from PR “pitch” for local use with your own story • Materials (revamp 1 in a Million?) to share in your community • Just have Conversations- you never know who you might reach • Iceland Association (Siggi) – Vaccines, ÓlafurDarriÓlafsson • Pepsi Refresh example

  8. Capital • Fundraising Toolkit • Step by Step instructions for many types of Fundraisers, with estimates of time & cost • Limited expense reimbursement potential from Foundation • Successful fundraisers mentoring new events & growing theirs year over year • Grants • We already have a shortlist of major grants to pursue (but need grant expert to offer services pro-bono) • Local grant resources that may support national initiatives like us to support local child (see Fundraising Stars for examples) • Major Donors • Need to learn best practices on approaching major donors • Train as many families & supporters as possible To ask (Board member accompany if possible) • Annual Campaign • Build existing/potential donor database through local fundraisers • Share stories from blogs , news stories, patient interviews, etc. to grow potential donors into • donors and existing donors into larger donors

  9. The Bottom Line… • “Alone we are rare. Together we are STRONG!”- NORD Slogan • "Never underestimate the power of a small, dedicated group of people to change the world; indeed, that is the only thing that ever has." - Margaret Mead • ”You must give birth to your images. Fear not the strangeness you feel. The future must enter you... Long before it happens.” Rainer Maria Rilke • Ask what YOUR foundation can do for you, AND ask what YOU CAN DO for YOUR foundation

  10. Next Family Meeting • When? 2014 • Where? TBD by Feb., 2013 • Until then… Bye-Bye! See you Later!

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